VALCYTE/VALGANCICYCLOVIR

Discussion in 'Fibromyalgia Main Forum' started by chngthnmtoME, Feb 12, 2007.

  1. chngthnmtoME

    chngthnmtoME New Member

    Anyone want to talk about how it feels? Been on it at 450 mg. once a day for nearly two weeks. Was having bad chest pains in the beginning, now am also having bad twitching of large muscle groups including my back, which has been "out" for nearly a week. Could use some support by others using Valcyte.


    <br>[<i>This Message was Edited on 02/16/2007</i>]
  2. Slayadragon

    Slayadragon New Member

    Interesting symptoms.

    You and SueJackson are both on 450 mg and both a couple of weeks into the process, and so you might want to compare notes as time goes on.

    Who is your doctor?

    Best, Lisa

  3. Slayadragon

    Slayadragon New Member

  4. chngthnmtoME

    chngthnmtoME New Member

    This was the only dose offered to me.
  5. suejackson

    suejackson New Member

    I'm on a low dose, too - 450 mg per day. My doctor doesn't feel comfortable going any higher. She's a family doctor, not a specialist. She has other CFIDS patients, but I'm the first one trying Valcyte.

    I'm in my fourth week, and I've had mild symptoms so far:
    - Feeling run-down and having much lower than normal stamina
    - Aching teeth (though that's a little better the past few days)
    - Some knee pain in week 3 on bad days
    - Maybe heavy allergy-type symptoms, like post-nasal drip, though I've had bronchitis this past week, so it's hard to tell.

    Please keep us updated on how you're doing. I'm especially interested in hearing from others on this same dose.

    Sue
  6. suejackson

    suejackson New Member

    Hey, has anyone else on Valcyte had sore, watery eyes? Mine are so bad today I couldn't even put my contacts in. I've also had bronchitis, so it could be from that, too.

    I think in general that my allergy symptoms may be kicked up on the Valcyte (I've sometimes had sore, watery eyes from allergies). Anyone else?

    Sue
  7. chngthnmtoME

    chngthnmtoME New Member

    My eyes have been even drier this week, they never water. I don't salivate much, either, though I don't have a diagnosis of Sjogren's (even though my doctor and dentist are sure I have it, rheumies just take the blood test and say, "we don't want to do a biopsy as your blood test is normal"- even though the biopsy is really the only way to tell if you have Sjogren's).

    I've been having a rough time, though that isn't exactly out of the norm for me. Out of work again today because of nausea and my back still being out. I do work full time, though I am always on the verge of being fired because of taking too many sick days.
  8. PGWS

    PGWS New Member

    Hi,

    I have written on Valcyte on other Threads (CFS 5.5 years). I am also on it according to Dr. Montoya's protocol, getting treated by Dr. Susan Levine right now. I am at week 13 today, taking 450mg 2x a day (first 21 days took 900mg 2x a day).
    For the first 4 week I had absolutely no side effects. Starting week 5-10 this is what I experienced: worse than ever headaches, my feet were killing me if I stood up and walked around/terrible pain no matter what I had on my feet or barefoot, could not sleep at all (even with strong sleeping pills), extraordinary sensitivity in my mouth/teeth to cold, hot or touch, blurry/foggy vision (especially when trying to read or focus, red eyes, more than normal severe swollen glands/sore throat, severe chills, fever on and off, my head felt so heavy I had to lay down most of the time and so did my arms and legs-more than normal, difficult time breathing-like I could not catch my breath, very very depressed/crying allot, dizzy/very uncoordinated, constant loud ringing in my ears. Yes some of these symptoms are the same as your general CFS side effects, but I am talking extreme.
    I was worried about my eyes and teeth so I went to eye doctor and dentist to get it checked out. There was no problem with either. The eye doctor said my eyes were just a bit dry. Those weeks were pretty bad
    Anyway starting week 11 all these added side effects from the drug went away and I started to fell better, mentally and physically and looked good. Not sure if I have over done it, but starting week 12 to current, I do not feel any improvement anymore. Maybe a little cognitively, that is why I can write this and be on the computer for a little while. Physically, absolutely nothing (I was extremely athletic prior to CFS)and this has caused me to become a bit depressed. Also, my 2 separate labs going into week 12 showed elevated Liver enzymes and mild bone marrow suppression. We have elected to keep me on it since I have come this far and will keep close watch. I am waiting for the results of this weeks test. This past week I feel like nothing good is being reflected in me with respect to CFS, on this drug, although I will try to remain hopeful. I had hoped to be doing much better at this point. Hopefully you will do great and progress fast. Maybe this will help, from my experience with this drug, those horrible side effects do "suddenly" disappear at least for me. I did also take Valtrex for 1.5 years before Valcyte with another doctor primarily for Constant fever blisters on my lips, 1000mg/day and I never had any side effects on that.

    Hope his helped to provide you with some insight, from my experience so far.
    Be well
    <br>[<i>This Message was Edited on 02/17/2007</i>]
  9. roge

    roge Member

    Thanks for the update.

    I'm sorry you are not feeling better.

    Please stay as positive as you can and always keep HOPE, it could be you just need more time.

    peace
  10. roge

    roge Member

    Thanks for the update.

    I'm sorry you are not feeling better.

    Please stay as positive as you can and always keep HOPE, it could be you just need more time.

    peace
  11. Slayadragon

    Slayadragon New Member

    I don't think that 13 weeks on Valcyte is that long, based on what I've read thus far. Hang in there a bit longer and hopefully you'll show some overt progress.

    The cognitive symptoms are really important in CFS, and you also may be getting rid of really dangerous viruses (like ones that attack the heart).

    If you've herxed that much, you've killed something. Give it some more time and please let us know your results!

    Best, Lisa

  12. chngthnmtoME

    chngthnmtoME New Member

    I made an appointment with Dr. Susan Levine, though her office told me she doesn't prescribe Valcyte(!?!). I don't know if I'll make it, though. I work full time and that is my day off, and I don't know if I have the energy to get into NYC in the morning. We'll see.

    I would like to take the higher dose, but I can't pay for this out of pocket. I also recently had a miscarriage, and am on the fence about this treatment. On the one hand, it might save an unborn baby and make me feel much better. On the other hand, it is absolutely contraindicated for pregnancy- and 3 months before. I'm almost 40, so it's a toss up. Do I shoot for feeling better, and maybe removing the cause of the miscarriage (no one's said the virus is the cause, but I personally believe it is)? Or do I think of my age and just try again? Hard for me to decide.

  13. Slayadragon

    Slayadragon New Member

    Infertility and miscarriage rates are supposed to be really high with CFS, I've read. (i got the killer flu that began my CFS when I was pregnant, and then had a miscarriage, and so I'm interested in this topic.)

    Conceivably, if you have an active infection of whatever virus is at the root of CFS, you could pass it on to the baby. If the virus were in low levels in your body or no longer present as a result of the Valcyte, the chance of this happening conceivably might be lower.

    Mothers with CFS apparently frequently have kids with CFS or chronic fatigue (what I think of as CFS-lite). Part of this is genetic, but part also could be viral exposure.

    It's hard to know though.

    Best, Lisa
  14. chngthnmtoME

    chngthnmtoME New Member

    I have heard about the miscarriage rates, and I worry about passing on CFIDS. I got this 22+ years ago with Mono, and I do have reactivated Epstein Barr, Parvovirus B19, and HHV6A, so I am sure the antiviral is a good approach. I just have concerns because of my age, and my husband really being so hurt by the miscarriage. He wants me to do what's best, but at the same time, I fear in a year, I might be too old.

    Thanks for your reply.
  15. heapsreal

    heapsreal New Member

    I know this is an old thread, but wondering if anyone on this thread who used the low dose valcyte, 450mg a day had any success with that dosing. Any higher dosing is just priced out of reach for me. I have had some success with famvir and would probably stay on a lower dose of famvir if i was on a low dose valcyte as well. Also how long did u stay on the treatment for?&lt;BR&gt;
    &lt;BR&gt;
    cheers!!!
  16. Mikie

    Mikie Moderator

    Whatever Herpes-Family Virus I have has reactivated and I'm on my second round of the AV. I am also using my zapper and it seems to produce greater Herx-like reactions than the AV does. I am considering ordering some transfer factors which are more effective than anything else I've ever tried. Unfortunately, the FDA has clamped down on making claims that the TF's target specific pathogens and, unfortunately, we don't know what strain of virus I have. So, I basically have to take the shotgun approach and go for the overkill.&lt;BR&gt;
    &lt;BR&gt;
    I'm waiting for this to go back into latency so I can get the peptide injections.&lt;BR&gt;
    &lt;BR&gt;
    Love, Mikie
  17. jo mooney

    jo mooney New Member

    I am new to the message board but I have been reading your message for a few months.&lt;BR&gt;
    &lt;BR&gt;
    When I saw this message I have also been taking valtrax and valcyte for about 4 years.&lt;BR&gt;
    &lt;BR&gt;
    I have been on different medicines for the last 4 years. I was on valcyte for the last 2 years&lt;BR&gt;
    but in March I was put on valtrax. I tried to take it for 2 months but I got so sick on it&lt;BR&gt;
    my heart rate and blood pressure went up high and was so sick for the 2 months. I finally&lt;BR&gt;
    got off and my heart rate and blood pressure and the sickness went away.&lt;BR&gt;
    &lt;BR&gt;
    My question is do anyone think that the medicines (valtrax and valcyte) is helping to bring down their virvus?&lt;BR&gt;

    Jo
    &lt;BR&gt;
    I have gone back and checked my lab work and I really can't tell the difference in my&lt;BR&gt;
    blood work. I am seeing my doctor on thursday and will discuss this with him.&lt;BR&gt;
    &lt;BR&gt;
    I paid $300.00 for the valtrax the last month. So, you see my concern and if it is necessary.&lt;BR&gt;
    &lt;BR&gt;
    I was just wondering if it was me or if it made a big difference in anyone else blood work.&lt;BR&gt;
    &lt;BR&gt;

    &lt;br&gt;&lt;br&gt;[&lt;i&gt;This Message was Edited on 06/13/2011&lt;/i&gt;]
    <br><br>[<i>This Message was Edited on 06/13/2011</i>]
  18. Mikie

    Mikie Moderator

    With depending on bloodwork is that one can have a stealth infection and no antibodies show up in the blood. There is an excellent article on the Home Page about this. PCR DNA is the only way to find stealth infections and these test are not reliable. &lt;BR&gt;
    &lt;BR&gt;
    Transfer Factors are less expensive than $300 and many have found them to be effective.&lt;BR&gt;
    &lt;BR&gt;
    Love, Mikie
  19. Mikie

    Mikie Moderator

    If anyone wants references, they are attached to the article.&lt;BR&gt;
    &lt;BR&gt;
    Dr. Holtorf on Infectious Causes of ME/CFS and Fibromyalgia&lt;BR&gt;
    ProHealth.com&lt;BR&gt;
    by Kent Holtorf, MD&lt;BR&gt;
    May 25, 2011&lt;BR&gt;
    &lt;BR&gt;
    &lt;BR&gt;
    Dr. Kent Holtorf, founder of the non-profit National Academy of Hypothyroidism, directs the Holtorf Medical Group in Torrance, Foster City, Pasadena, and Sacramento, CA, Kansas City and Minneapolis. Dr. Holtorf specializes in researching and employing &quot;innovative evidence-based therapies for hard-to-treat and poorly understood illnesses: hypothyroidism, complex endocrine dysfunction, chronic fatigue syndrome (ME/CFS), fibromyalgia and chronic infectious diseases including Lyme and chronic viral illness.&quot;&lt;BR&gt;
    &lt;BR&gt;
    As noted below, Dr. Holtorf was intrigued to find that the only patients in his practice who tested XMRV-positive were chronic Lyme patients, and has been supervising some of them on anti-retroviral regimens. An upcoming newsletter will feature his Q&amp;A with representative patient(s) from this group.&lt;BR&gt;
    &lt;BR&gt;
    _________________________________&lt;BR&gt;
    &lt;BR&gt;
    Numerous studies have demonstrated a high incidence of chronic infections in chronic fatigue syndrome and fibromyalgia.&lt;BR&gt;
    &lt;BR&gt;
    These include viral infections of Epstein-barr (EBV), cytomegalovirus (CMV), human herpes virus-6, (HHV-6), and bacterial infections such as mycoplasma, Chlamydia pneumoniae (CP) and Borrelia burgdorferi (Lyme disease).&lt;BR&gt;
    &lt;BR&gt;
    There is controversy regarding the presence of active infection in these conditions because physicians, including infectious disease specialists, do not understand that the standard way to diagnose acute infections - an elevation of IgG and IgM antibodies - is not a sensitive means of detecting chronic infections in these patients (1-21).&lt;BR&gt;
    &lt;BR&gt;
    With an acute [new] infection, the body will start producing IgM antibodies against that infection and then start producing IgG antibodies after a few weeks so there is an elevation of both IgG and IgM antibodies.&lt;BR&gt;
    &lt;BR&gt;
    Chronic reactivating infections, such as those mentioned above, do not stimulate IgM antibodies, as they are not new infections but rather intracellular reactivating infections.&lt;BR&gt;
    &lt;BR&gt;
    So most doctors, again including infectious disease specialists, will tell patients who have elevated IgG antibodies that they had an old infection or previous exposure and that there is no evidence of, or they do not have, an active infection - because that is what they learned in medical school.&lt;BR&gt;
    &lt;BR&gt;
    This standard way of detecting active infections has clearly been shown to be inaccurate and misses the overwhelming majority of patients with active infections (1-21).&lt;BR&gt;
    &lt;BR&gt;
    Polymerase chain reaction (PCR) testing [which can generate thousands of copies of a DNA sequence from one or a few copies] is much more sensitive in a research setting than in the clinical setting, because if the blood sits for more than a few hours, the infectious organism’s DNA degrades and often goes undetected. So in a clinical setting, PCR is a specific test (if it is positive you know you have an active infection), but suffers from low sensitivity (often negative despite an active chronic infection).&lt;BR&gt;
    &lt;BR&gt;
    Additionally limiting sensitivity is the fact these infections are not concentrated in the blood or serum but rather in the tissues, especially nerves, brain and the white blood cells. &lt;BR&gt;
    &lt;BR&gt;
    Physicians must have a high incidence of suspicion and look for elevated IgG or early antigen (EA) antibodies along with other signs of chronic infections including low natural killer cell activity, high RNase-L activity, high ACE (&gt; 35), coagulation activation, high tumor necrosis factor (TNF), low melanocyte stimulation hormone (MSH), high interleukin-6 (IL-6), low WBC [white blood cell levels], increased 1,25 vitamin D/25 vitamin D ratio, and elevated or decreased total IgA, IgM or IgG levels.&lt;BR&gt;
    &lt;BR&gt;
    Chronic infections are almost always present in:&lt;BR&gt;
    &lt;BR&gt;
    • Those whose symptoms started very acutely, especially with an infection,&lt;BR&gt;
    &lt;BR&gt;
    • Those whose symptoms were ever associated with swollen lymph nodes or sore throat,&lt;BR&gt;
    &lt;BR&gt;
    • And those with significant cognitive dysfunction or flu-like symptoms.&lt;BR&gt;
    &lt;BR&gt;
    It must be remembered that in order to have the highest probability of successful treatment, a multi-system approach should be initiated. (See Dr. Holtorf’s handout, “New Standard for the Treatment of Chronic Fatigue Syndrome and Fibromyalgia.”).&lt;BR&gt;
    &lt;BR&gt;
    HERPES VIRUSES (Epstein-Barr, Cytomegalovirus and HHV-6)&lt;BR&gt;
    &lt;BR&gt;
    EBV, CMV and HHV-6 cause or contribute to the symptoms of a large percentage of CFS and FM patients.&lt;BR&gt;
    &lt;BR&gt;
    As stated previously, the presence of active infections correlates with an elevated IgG antibody, despite the lack of IgM antibodies (10-21). &lt;BR&gt;
    &lt;BR&gt;
    These infections are generally not acute, but rather intracellular reactivation of an old infection. An elevation of IgM antibodies is typically not seen with active infections of EBV, CMV, HHV-6 (10-21).&lt;BR&gt;
    &lt;BR&gt;
    Due to the immune dysfunction seen in CFS, in addition to a lack of IgM antibody formation, there may also be a lack of IgG antibodies present despite the presence of an active infection in CFS patients(22,17,23). This has also been demonstrated to be the case with AIDS patients, as demonstrated in the study published in the New England Journal of Medicine entitled “Absence of detectable IgM antibodies during cytomegalovirus disease in patients with AIDS”(22).&lt;BR&gt;
    &lt;BR&gt;
    It has also been shown that the presence of anti-thyroid antibodies in CFS patients has a significant correlation with active HHV-6 infection (24).&lt;BR&gt;
    &lt;BR&gt;
    » A study published in Acta Pathologica, Microbiologica et Immunologica Scandinavica entitled “Multiple co-infections (Mycoplasma, Chlamydia, human herpes virus-6) in blood of Chronic Fatigue Syndrome Patients: Association with Signs and Symptoms” found:&lt;BR&gt;
    &lt;BR&gt;
    • 52% of CFS patients had active mycoplamsa infection,&lt;BR&gt;
    &lt;BR&gt;
    • 30.5% had active HHV-6 infection,&lt;BR&gt;
    &lt;BR&gt;
    • And 7.5% had Chlamydia pneumoniae infections,&lt;BR&gt;
    &lt;BR&gt;
    • Versus only 6%, 9% and 1% of controls, respectively.&lt;BR&gt;
    &lt;BR&gt;
    They conclude, “The results indicate that a large subset of CFS patients show evidence of bacterial and/or viral infection(s), and these infections may contribute to the severity of signs and symptoms found in these patients (25).”&lt;BR&gt;
    &lt;BR&gt;
    » A study entitled “A Chronic Illness Characterized by Fatigue, Neurological and Immunological Disorders, and Active Human Herpes virus Type 6 Infection” published in the Annals of Internal Medicine found 70% of patients with CFS had active HHV-6 infection through the use of primary cell cultures and confirmation using assays of monoclonal antibodies specific for HHV-6 proteins and by PCR.&lt;BR&gt;
    &lt;BR&gt;
    Again, an elevation of IgM antibodies is generally not seen (26). &lt;BR&gt;
    &lt;BR&gt;
    As summarized below, when specialized testing is used to detect active vs. past infection of HHV-6, the overwhelming number of studies demonstrate a high incidence of active herpes virus infections. These reactivation infections often do not illicit an IgG and especially not an IgM response, so standard serologic testing is specific but not sensitive for such infections.&lt;BR&gt;
    &lt;BR&gt;
    As mentioned before, PCR testing in a research setting is much more reliable, sensitive and useful than in the clinical setting when the blood is usually not processed for 12 to 48 hours. &lt;BR&gt;
    &lt;BR&gt;
    » Wagner et al, found that 61% of CFS patients who had elevated IgG antibodies, and 81% with immune deficiency, had confirmed active HHV-6 infection, vs. only 19% of those patients who did not(15). This is regardless of whether or not IgM antibodies were elevated.&lt;BR&gt;
    &lt;BR&gt;
    Below in Figure 1 is a summary of studies that have looked at the incidence of active HHV-6 infection in CFS/FM patients vs. controls, with 83% of the studies demonstrating a large portion of CFS/FM patients have an active HHV-6 infection.&lt;BR&gt;
    &lt;BR&gt;
    Figure 1&lt;BR&gt;
    &lt;BR&gt;
    &lt;BR&gt;
    (click image to enlarge)&lt;BR&gt;
    » A study by Lerner [A. Martin Lerner at the Treatment Center for CFS] found that treating patients with 6 months of Valtrex resulted in a significant improvement in symptoms (46).&lt;BR&gt;
    &lt;BR&gt;
    » In a separate study, Lerner et al found that in CFS patients with elevated IgG antibody against CMV, treatment with the intravenous antiviral ganciclovir, which has a more broad spectrum coverage than Valtrex and anti-CMV activity, resulted in 72% of patients returning to their premorbid health states (total resolution of symptoms) (47).&lt;BR&gt;
    &lt;BR&gt;
    » A randomized, placebo controlled study published in Clinical Infectious Diseases demonstrated that in CFS patients with elevated IgG antibodies against CMV, a combination of oral Valtrex and intravenous ganciclovir resulted in dramatic improvements with almost complete resolution of symptoms (27).&lt;BR&gt;
    &lt;BR&gt;
    » Montoya et al. at Stanford University [Infectious Disease Clinic] treated chronic fatigue syndrome patients with 6 months of valganciclovir (Valcyte) if they had elevated IgG tests for HHV-6 and EBV and had at least 4 of the following symptoms: impaired cognitive functioning, slowed processing speed, sleep disturbance, short-term memory deficit, fatigue and symptoms consistent with depression. &lt;BR&gt;
    &lt;BR&gt;
    Nine of the twelve treated patients (75%) “experienced near resolution of their symptoms, allowing them all to return to the workforce or full time activities.” In the nine patients with a symptomatic response to treatment, EBV VCA IgG and HHV-6 IgG titers significantly dropped. (21)&lt;BR&gt;
    &lt;BR&gt;
    » Lerner et al collected data on 142 CFS patients treated with antivirals. They found that long-term antiviral therapy was effective unless other untreated coinfections were present.(53)&lt;BR&gt;
    &lt;BR&gt;
    » We [Holtorf Medical Group] have found that an effective treatment protocol requires the use of an anti-infectious treatment in a significant portion of CFS patients (and the majority of severely affected).&lt;BR&gt;
    &lt;BR&gt;
    While no single treatment is universally beneficial, we have found that a variety of anti-infectious and immune-modulatory therapies can be very effective. These include Valcyte, Isoprinosine, Kutapressin, gamma globulin (IM or IV), antiviral nutraceuticals, species specific transfer factor, antibiotics, anti-retrovirals, anti-parasitics and low dose naltrexone.&lt;BR&gt;
    &lt;BR&gt;
    There are a number of markers that indicate that there is an underlying chronic infection as a cause or contributor to the illness. These include:&lt;BR&gt;
    &lt;BR&gt;
    • Flu-like symptoms or symptoms started with a flu-like illness;&lt;BR&gt;
    &lt;BR&gt;
    • Elevated IgG or EA against Epstein-Barr virus, Cytomegalovirus and/or HHV-6;&lt;BR&gt;
    &lt;BR&gt;
    • Low Natural Killer cell activity or number;&lt;BR&gt;
    &lt;BR&gt;
    • High reverse T3 or low free T3/reverse T3 ratio;&lt;BR&gt;
    &lt;BR&gt;
    • Low CD57;&lt;BR&gt;
    &lt;BR&gt;
    • High eosinophilic cationic protein (ECP) or vascular endothelial growth factor (VEGF);&lt;BR&gt;
    &lt;BR&gt;
    • High RNase-L activity;&lt;BR&gt;
    &lt;BR&gt;
    • High ACE (&gt; 35);&lt;BR&gt;
    &lt;BR&gt;
    • Coagulation activation (high D-dimer, thrombin-prothombin complex, high prothrombin fragment 1 &amp; 2, PAI-1 or soluble fragment monomer);&lt;BR&gt;
    &lt;BR&gt;
    • High tumor necrosis factor (TNF), IL-6 or NFKB;&lt;BR&gt;
    &lt;BR&gt;
    • Low melanocyte stimulation hormone (MSH);&lt;BR&gt;
    &lt;BR&gt;
    • Low WBC;&lt;BR&gt;
    &lt;BR&gt;
    • Increased 1,25 vitamin D/25 vitamin D ratio;&lt;BR&gt;
    &lt;BR&gt;
    • High C4a or C3a;&lt;BR&gt;
    &lt;BR&gt;
    • And/or elevated or decreased IgA, IgM or IgG levels;&lt;BR&gt;
    &lt;BR&gt;
    • Positive XMRV antibody or culture test.&lt;BR&gt;
    &lt;BR&gt;
    This study contributes more confirmatory evidence that IgM antibodies are not typically elevated in chronic reactivating infections, so most patients are incorrectly told they do not have an active infection based on such testing. This study also demonstrated the lack of sensitivity of standard PCR testing.&lt;BR&gt;
    &lt;BR&gt;
    There is also evidence that CFS may be due to the above discussed infections with “stealth adaptation” (28-38).&lt;BR&gt;
    &lt;BR&gt;
    This is primarily due to the deletion of the genes coding for the major antigenic components normally targeted by the cellular immune system.&lt;BR&gt;
    &lt;BR&gt;
    “Stealth viral adaptation” results in replication that is less efficient than conventional viruses, but has a distinct advantage over conventional viruses in not having to confront the body’s cellular immune defense mechanisms. The virus can, therefore, evade the immune system and create persistent ongoing infections in spite of an individual’s intact immune system (28-38).&lt;BR&gt;
    &lt;BR&gt;
    A number of studies have also shown dramatic improvement in patients with interferon treatments, especially those with low Natural Killer cell function (39,40,41).&lt;BR&gt;
    &lt;BR&gt;
    While ganciclovir and interferon may be effective, their toxicity precludes their use and there are less toxic means of eradicating these infections.&lt;BR&gt;
    &lt;BR&gt;
    MYCOPLASMA&lt;BR&gt;
    &lt;BR&gt;
    Numerous studies have demonstrated a high incidence of active Mycoplasma infection in CFS and FM (1,44-52). [Mycoplasma are unique fungus-like bacteria that lack a cell wall and aren’t affected by many common antibiotics that keep bacteria from multiplying by interfering with their cell wall formation.]&lt;BR&gt;
    &lt;BR&gt;
    » Nijs et al. published a study in the journal Immunology and Medical Microbiology entitled “High Prevalence of Mycoplasma Infections Among European Chronic Fatigue Syndrome Patients,” which demonstrated that 68% of CFS patients had an active mycoplasma infection as diagnosed with specialized polymerase chain reaction (PCR) testing where the red and white cells were immediately lysed and centrifuged to concentrate and collect the DNA (1).&lt;BR&gt;
    &lt;BR&gt;
    Being predominantly intracellular, there is typically not a significant serologic antibody response or just an isolated IgG response with this number of other intracellular infections, so IgG and especially IgM antibodies are almost always in the normal range despite the presence of an active infection (1-9).&lt;BR&gt;
    &lt;BR&gt;
    This study and others discussed below demonstrated that IGM antibodies are not helpful in the diagnosis of an active infection in CFS and FM.&lt;BR&gt;
    &lt;BR&gt;
    Nijs et al. stated, “Mycoplasma detection based on antibody testing is characterized by a very high specificity [if IGG and IGM positive], but extremely low sensitivity [active infection almost always present without elevated IgG and IgM an¬tibodies] renders it useless as a diagnostic tool (1).”&lt;BR&gt;
    &lt;BR&gt;
    » A study by Dylewski et al. in the New England Journal of Medicine demonstrates that in immune compromised patients, such as this patient, active infections correlate with elevations in IgG antibodies without elevations of IgM antibody, and that a lack of elevation of IgM is not useful in these patients as a way to rule-out active infection. A high clinical suspicion must be maintained and implementation of anti-infective treatment should be based on elevated IgG levels (9).&lt;BR&gt;
    &lt;BR&gt;
    » A study entitled “Diagnosis and Treatment of Chronic Mycoplasmal Infections in Fibromyalgia and Chronic Fatigue Syndrome: Relationship to Gulf War Illness,” published in Biomedical Therapy investigated the presence of active mycoplasmal infection by forensic PCR in patients with CFS and/or FM vs. controls.&lt;BR&gt;
    &lt;BR&gt;
    They found that 63% of CFS/FM patients had active mycoplasmal species infection compared to 9% of normals, and more specifically the incidence of active Mycoplasma fermentans infection was 50% in CFS/FM patients vs. 0% of controls (2).&lt;BR&gt;
    &lt;BR&gt;
    » A study published in the International Journal of Medicine Biology Environment tested the blood of 565 CFS and/or FM patients vs. 71 healthy controls. They found 53.1% of patients were positive for mycoplasmal infection vs. only 7 out of 71 controls - and 24.6% of patients had an M. fermentans infection, vs. 2.8% of normals (42).&lt;BR&gt;
    &lt;BR&gt;
    » A study published in the International Journal of Occupational Medicine, Immunology and Toxicology found that through specialized testing:&lt;BR&gt;
    &lt;BR&gt;
    • More than half of Gulf War Syndrome/CFS patients had active mycoplasma infections that would not have been detected by standard serological IgG and IgM testing,&lt;BR&gt;
    &lt;BR&gt;
    • And that 78% of the patients completely recovered with appropriate treatment.&lt;BR&gt;
    &lt;BR&gt;
    • Additionally, all of recovered patients who were subsequently retested no longer had evidence of infection (7).&lt;BR&gt;
    &lt;BR&gt;
    » A study and review published in the Antimicrobics and Infectious Disease Newsletter discussed the high incidence of mycoplasma infections in CFS.&lt;BR&gt;
    &lt;BR&gt;
    • They discuss the fact that the culturing procedures and serological testing are insensitive for detecting intracellular infections due to the fact that there is usually a lack of hormonal response with these infections resulting in “normal” antibody titers or an isolated elevation of IgG antibodies with a lack of IgM antibodies (8).&lt;BR&gt;
    &lt;BR&gt;
    • Sophisticated PCR testing found multiple species of mycoplasma in the majority of CFS patients.&lt;BR&gt;
    &lt;BR&gt;
    • They found of the 87 Gulf War illness-chronic fatigue syndrome patients treated with antibiotics, most relapsed after the first 6 week trial and most felt worse, but after up to 6 cycles of 6 weeks of therapy approximately 80% of these patients recovered and were able to return to their normal functional capacity.&lt;BR&gt;
    &lt;BR&gt;
    This was not a placebo controlled trial, but they discuss the fact that it is unlikely a placebo effect that most patients felt worse during treatment.&lt;BR&gt;
    &lt;BR&gt;
    They conclude stating that in order to be successful in the treatment of Gulf War Illness-chronic fatigue syndrome, a comprehensive treatment approach must be used that addresses the numerous physiological abnormalities, including chronic infections (8).&lt;BR&gt;
    &lt;BR&gt;
    » A study by Nasralla et al. published in the European Journal of Clinical Microbiology &amp; Infectious Disease entitled “Multiple Mycoplasmal Infections Detected in Blood of Chronic Fatigue Syndrome and Fibromyalgia Syndrome Patients” investigated the presence of different mycoplasmal species in blood samples from mycoplasma positive patients with chronic fatigue syndrome and/or Fibromyalgia.&lt;BR&gt;
    &lt;BR&gt;
    They found that the majority of patients had multiple species of mycoplasmal infections, with:&lt;BR&gt;
    &lt;BR&gt;
    • 59% of patients having active M. pneumoniae infections, &lt;BR&gt;
    &lt;BR&gt;
    • 48% having active M. fermentans infection,&lt;BR&gt;
    &lt;BR&gt;
    • 31% having an active M. hominis,&lt;BR&gt;
    &lt;BR&gt;
    • And 20% having M. penetrans (43).&lt;BR&gt;
    &lt;BR&gt;
    XMRV (Xenotropic Murine Leukemia Virus-Related Virus)&lt;BR&gt;
    &lt;BR&gt;
    I was skeptical about XMRV at first and thought it was most likely an opportunistic infection. One reason was that Quest did a pilot study in our office and we found that all the patients who were positive were the chronic Lyme patients. [Quest Diagnostics Clinical Trials in Valencia, CA - See their poster, &quot;A Sensitive Real-time Assay for the Detection and Quantification of XMRV,&quot; presented at the recent 2011 Conference on Retroviruses and Opportunistic Infections in Boston.]&lt;BR&gt;
    &lt;BR&gt;
    Thus my thinking was that Lyme must the primary infection with XMRV being secondary or opportunistic.&lt;BR&gt;
    &lt;BR&gt;
    Now I think that was too simplistic and think the evidence is showing that having XMRV is a reason that Lyme may not be cleared in some or many patients and may need to be treated.&lt;BR&gt;
    &lt;BR&gt;
    Our initial treatment with anti-retrovirals has been encouraging. I have been using Isentress [raltegravir] and then adding Viread [tenofovir]. Also using GcMAF [&quot;vitamin D-binding protein,&quot; thought to activate immune macrophage response to infectious micro-organisms] in some. &lt;BR&gt;
    &lt;BR&gt;
    [ProHealth note: As a means of sharing the findings of these anti-retroviral treatments, Dr. Holtorf has indicated he will construct a brief Q&amp;A with one or more of the chronic Lyme patients in his care who may wish to volunteer their experience and observations regarding the therapy. To be included in a future newsletter.]&lt;BR&gt;
    &lt;BR&gt;
    &lt;BR&gt;
  20. heapsreal

    heapsreal New Member

    I have been on famvir 250mg twice a day now for a year and improved quite alot almost back to normal, my elevated lymphocytes had come down to almost normal and then i switched to valtrex for 8 months because it was cheaper. Valtrex didnt help me, maybe because i also have cmv as well as ebv and i have heard that famvir does work against cmv and hhv6 and others have had their viral titres come down with famvir. So i went backwards and my lymphocytes all went up again as well. I have since switched back to famvir for the last 9 months or so and it has helped but not as well as it did the first time, it has brought my lymphocytes down but also wondering if i may have another infection going on as well, so will be looking into that. &lt;BR&gt;
    &lt;BR&gt;
    I have found a generic source of valcyte (link not allowed, removed by moderator) which i could probably afford maybe one tab a day. SO im after info if its worth using one valcyte a dat with maybe 250mg famvir. Im from australia so no insurance would cover any of this so have to pay full price for anything off label.&lt;BR&gt;
    &lt;BR&gt;
    Mikie, the stealth viruses you mentioned, is that originally from dr john martin ? i believe he has more research concerning this but i dont have any information on this.&lt;BR&gt;
    &lt;BR&gt;
    cheers!!!